Michigan Newbie

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Michigan Newbie

Postby Starfire » Fri May 18, 2007 9:07 am

I posted this once before. Then the system crashed. So I never got access to any info that was posted.

So here we go again.
I live in Kalamazoo, Michigan. I was just diagnoised with Syringomelia. My doctor ordered a MRI. At this time they found it. She said she knew nothing about this disorder and sent me to a Neurosurgeon. When I went to see the NS he looked at the results of the MRI and then didn't say much. He scheduled me for a EMG supposedly to test for carpohl tunnel. Which I have a very mild case in right hand but none in left. I am to see him again on the 23rd. I am scared. After reading much of the information on your site, I realized I will needs some allies when it comes to this.

My symptoms have become more prominent in this last year. Although my symptoms are mild compared to others. But after reading I realized I have been displaying many of the symptoms but they attributed it to other things. It is good to know others have experienced misdiagnois, too. Where in this area is a specialist? I think this NS is not experienced with this. I want to be proactive.

It was such a blessing to find this site. Even though I am realizing I will just be learning to lived with this disorder. I know you all have a understanding of what I am dealing with and what may happen in the future. It helps just to know you are here.

I will look forward to more info.
Thank you

Postby unicorns » Fri May 18, 2007 10:45 am

Welcome - glad you found this site - I know I'm glad it's here! Don't have any answers for you, but just wanted to say welcome - I'm fairly new as well and still learning. Have you checked out the videos at: http://www.northshorelij.com/body.cfm?i ... inkID=6407 - they're very informative.
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Postby RoadGlideMama » Fri May 18, 2007 12:07 pm

I'm also from Michigan. Our stories sound the same. Get a 2nd opinion. If anything it will help to calm the fear and anxiety that comes along with such bad news. I got my 2nd opinion from Univ. of Michigan http://www.med.umich.edu/Neurosurgery/. It only took a month after the original NS appt to when I went to U-M.


Postby Starfire » Fri May 18, 2007 12:14 pm

I am so glad to know someone else is experiencing the same.
I had already decided to check into University Hospital in Ann Arbor.
But I will let you know if I am stuck.

From Michgan too - subarachnoid shunt diagnosis

Postby Kbudde » Sat Jun 09, 2007 10:24 pm

Hi - I am from MI too. My dr. sent me to a neurologist last year, and he immediately put all the pieces together from the various symptoms that I thought were due to other, un-related things. Since then, I have had two surgeries - decompression and insertion of a shunt for hydrocephalus... and a ton of MRI's. I like my neursurgeon, but have decided to seek a second and third opinion since its been suggested that I have a sub-arachnoid shunt placed in my spine.

I am seeing a neuorosurgeon at U-of-M on Weds - and have seen other surgeons at the MI Head and Spine Institute and at the Cleveland Clinic. Two of the opinions have been left and right field, so I am very interested in getting a third opinion. It's very frustrating to say the least. I just want a normal summer without having to worry about next steps.
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Postby razzle51 » Sun Jun 10, 2007 5:23 am

This is a good site to go to for help in your state Devin knows alot about Drs etc
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Appreciate all the info.

Postby Starfire » Mon Jun 11, 2007 10:07 am

I have seen a second NS. He has stated I actually have Chairi (spelling?)
So he is saying I need decompression surgery and drainage. Why is it Drs talk like these surgeries are a breeze? I left the office in a state of numbness. To much to absorb.

How can I get referred to University Hospital in Ann Arbor? Do I need to get my regular Dr to do a referral? She referred me to one NS. He is about to retire.

The first NS stated I had stage 1 and suggested I could wait a year. But then he wanted to share my MRI results with the head of Neurology. They called me and this is the second DR. who has changed what he feels need to be done.

I just want to run and bury my head in the sand.

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